Happily Ever After...

Deck the halls with IV sticks. FaaaLaLaLaLaLa LaLaLaLa. Tis the Season to be sick. FaaaLaLaLaLaLa LaLaLaLa . Don we now hospital apparel. FaaaLaLaLaLaLa LaLaLaLa. And sister vomiting makes our home ferrel. FaaaLaLaLaLaLa LaLaLaLa. **We rang in Christmas Eve in the ER with Celia who had a ridiculously high heart rate (180 while sleeping) due to a high fever. The ER staff was well versed in mito kids, and took every precaution as well as did every test to make sure they weren't missing something. After several hours of IV fluids, it was decided that the hospital was way too dangerous a place for Miss Celia, and that we could manage it at home. If her heart rate jumped up that high, we would have to bring her back, as her heart can get "stuck" in a tachycardia and then her blood pressure can drop, which is dangerous. On Christmas Day  poor Aria started vomiting, and Gianna's tummy hurt and Sofia had the awful cough min...

Christmas Season 2012  Aria had her first violin recital at a nursing home.  And we spent a lot of time sitting around the tree.  We made fun-shaped pizzas.  And had friends over for a pajama party.  We decorated gingerbread houses.  And visited the Governor's Mansion.  With precious friends.  We had our annual father/daughter Christmas tea. And snuck in a few tastes of whip cream. We had a fun celebration with the cousins courtesy of Grandmommy.  And sang in Christmas programs at church. We did walking light tours, had peppermint sundaes with our dearest friends, and sipped copious amount of hot chocolate. and then, because our life is way too boring as it is, we decided to spice things up. More on that soon!

 In the midst of medical stuff, sleepless nights, pulse ox alarms blaring,  uncertainity, unanswered questions, a new normal,  we have purposed to remember our focus, and the REASON for the season, to enjoy our children,  and LOVE HEARTILY Every. Single. Day. to make memories, to live like every day is our last. Because each day is a treasured gift. We don't want to EVER lose sight of that. This is Lucy. This picture was take on December 3, 2012 On December 14th, Lucy lost her battle with Mito Complex 1. She was 4 years old, just like Celia. She lives in our neighborhood. Lucy was a bright, cheerful bundle of JOY. Just. like. Celia. And today, her parents arms are empty. I ACHE for them. And snuggle each one of my girls a little bit longer. Please join me in praying for Lucy's family.

Our little Punkin' has decided to throw us yet another curve ball. We got the results of her blood work, and although her oxygen is being processed correctly, she shows that she is dehydrated. SAY WHAT?!? We have doubled her water intake (she is g-tube fed, so everything that she consumes is very carefully measured) and she even had pedialyte for a few days last week when all this started. Her Dr. agrees that we are giving her more than enough fluids which leads to the million dollar question: Why the heck were her sodium levels high? Right now we have two possibilities: She has an undiagnosed kidney disorder. OR Her brain is not telling her heart, lungs and kidneys to work properly. The Drs are going to have a little pow-wow to see what they can come up with, and get back to us next week. And in other news, we have had LOTS of fun crating, gingerbread house decorating and such. Just trying to enjoy the holidays as much as possible and not allow all this to rob...

Well our little Miss has been BUSY! We survived the weekend with oxygen, toe glow, and g-tube cords and kept most of them in their relative places. We earned our "take your medically fragile kid to church" badge. Go US!! My sweet friend Rachel (I LOVE YOU RACH!!) took the twins into a private room to play with them so we could hear the sermon. A MUCH needed break. She didn't mind all the cords and wires, and even took Celia out of her stroller and was reading to her. A gem of a friend! On Sunday during church with Rachel, AND on the way home, she de-satted into the low 80's several times while on oxygen. Hmmmm..... So Monday we pow-wowed with her pulmonary Doc and she is now thinking: A) It's a cardiac issue. Side note:We went to the Cardiologist today and her heart is structurally sound. She has now added a heart monitor with all its wires to ALL THE OTHER WIRES AND TUBES for the next 24 hours to see what her sinus rhythm is when she has her heart rac...

 Our little mystery girl is trying to shake things up. And it may or may not be making her Momma worry. A. Lot. The Pulmonologist told us to start the oxygen 24/7 through the weekend  to see if we could get that wild heart rate down. So we started at 12PM yesterday. And her heart rate went from 145-160 down to 95-100. And stayed there. Nary an alarm was heard for the entire day.  I'm not going to pretend that I didn't just hold her and cry. For relief that her heart was settling down. And for the sheer sadness that it appears that she has taken another step down. And tears for all this means for all of us. Oxygen tanks. Fear of one exploding. Traveling with cords all over her body. Sleepless nights. Wondering how she will ever get out of her wheelchair. Wishing she could roll on the floor with her sisters. Not knowing how to make this normal. Wishing it was a bad dream. Knowing it isn't.  And then we decided to ...

Little Celia-Boo has pulled out her bag of tricks and has played a few cards. We started her on her pulse-ox as soon as we got back from vacation. Oh, did I mention we spent a week in the VA mountains with family?!? Oops. It was a great trip! We got home and the first night, while she was completely at rest, her alarm went off because her heart rate was in the mid 140's. As she was falling asleep. At first, I wasn't too worried because the alarms have not gone off during the night, so I assumed it was a fluke. Can I just stop here and say that I LOVE TOE GLOW?? It tells me if my daughter is breathing or not. Cross off another worry from my list. My Christmas list may or may not include Toe Glow for all of my other children. Breathing is good. Very good. Anyhoo, today while she was in school with her teacher and therapists, her lips turned blue. I got the pulse ox and she was in the low 80's ( above 90 is considered in the normal range) but quick...

 Whew! I can't believe my blog has been dormant for almost a WHOLE MONTH. Sheesh. I thought I'd show you what we've been up to. Just so you know that we haven't been sitting around eating bonbons or something.  First, the twins got a little cuter, if that's even possible. And then Celia had 57 doctor appointments that were an hour away. Okay, not really, but almost 57.  Then Gianna, who would not be outdone by her little sister,  decided to have her FIRST LOCAL SURGERY.  Which included an ENTIRE DAY of pre-op appointments. An hour away of course. I decided to declare it a homeschool field trip. I'm fun like that.  Sofia played dress-up 57 times. And looked mighty adorable doing it.  Daddy was mauled by a passel of girls. And lived to tell the tale.  Gianna got to try out her new wheelchair stroller. And she and Curious George prepared for their 9th surgery. With grace an...

 Corn Maze 2012  Returning from last year- Ry and Aria  The very confident Chelsea and Gianna Combo The rules were simple: NO RUNNING. It was a controversial finish with accusations of runners, and denials and such.  On Maze #1 we have returning champions.  But on the more difficult maze  (just saying')  we had underdog winners- The Oldies and the Babies came in first!! Notice Celia's #1 finger please. She works hard to get that finger to cooperate.  The it was off to the giant pillow. Celia still wants one.  The sisters hopping it up. Gianna's new Dr. is more lax on rules. This actually isn't cheating. I still worry though.  Twinny Twin Twins Because this shot took 217 tries  (give or take 2) Aria was none too thrilled. Oh well. Look at the cute jackets their Grandma made for them!  Who needs a sand box when you have a Corn Kernel ...